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What are the stages of myelofibrosis
My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 negative essential thrombocythaemia since 2009. His consultant will be watching him closely for the next few months and has not yet prescribed any treatment. She gave us an information pamphlet to read, which we found very
My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 negative essential thrombocythaemia since 2009. His consultant will be watching him closely for the next few months and has not yet prescribed any treatment. She gave us an information pamphlet to read, which we found very
Richinspirit
in
MPN Voice
2 days ago
Deep Brain Stimulator
I know this is way out of this forum, but I can't find a group to discuss with. I had a deep brain stimulator surgical procedure to help with an Essential Tremor in my hand. I had my dominate hand done 11 yrs ago at a different hospital. Had no issues with the results. At the end of May I had my other
I know this is way out of this forum, but I can't find a group to discuss with. I had a deep brain stimulator surgical procedure to help with an Essential Tremor in my hand. I had my dominate hand done 11 yrs ago at a different hospital. Had no issues with the results. At the end of May I had my other
Beth1949
in
Lung Conditions Community Forum
3 days ago
Wales.
I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocythemia. Does anyone else have this condition as I haven't been given a PALS or anyone to talk to. In England I here I would have had one, or been able to speak to someone. Any help to speak to someone would be great. This
I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocythemia. Does anyone else have this condition as I haven't been given a PALS or anyone to talk to. In England I here I would have had one, or been able to speak to someone. Any help to speak to someone would be great. This
mag123ben
in
MPN Voice
10 days ago
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Jakafi/Weight Gain
I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number
I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number
Miriammusic
in
MPN Voice
13 days ago
A Blip in time!
I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium
I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium
Barney50
in
MPN Voice
15 days ago
Jakafi - Chronic Myelofibrosis
I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting. During the 1st two weeks I experienced nauseas & dizziness with both dosages
I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting. During the 1st two weeks I experienced nauseas & dizziness with both dosages
Fresa7
in
MPN Voice
24 days ago
MPN Specialists in Uk
Hello My name is Jackie In April of this year I was diagnosed with Intermediate Stage 2 MF. This followed 10 years receiving treatment for ET. My haematologist said he hadn't expected to see this development for another 5+ years. As my father died 3 days after his diagnosis of Acute Myeloid Leukaemia
Hello My name is Jackie In April of this year I was diagnosed with Intermediate Stage 2 MF. This followed 10 years receiving treatment for ET. My haematologist said he hadn't expected to see this development for another 5+ years. As my father died 3 days after his diagnosis of Acute Myeloid Leukaemia
16Gardinia
in
MPN Voice
1 month ago
Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia
»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myeloproliferative neoplasms is associated with features of advanced disease and complications. Ruxolitinib and interferon were reported to variably reduce the mutant VAF, but the long-term impact of molecular responses (MR) remains
»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myeloproliferative neoplasms is associated with features of advanced disease and complications. Ruxolitinib and interferon were reported to variably reduce the mutant VAF, but the long-term impact of molecular responses (MR) remains
Manouche
in
MPN Voice
1 month ago
Community Guidelines
Welcome to the Leukaemia Support Community for support of Leukaemia! We’re very glad you have chosen to be a part of our community. The Leukaemia Support community - offered by HealthUnlocked (HU) - supports individuals affected by leukaemia. Whether you are an individual who has been diagnosed, a
Welcome to the Leukaemia Support Community for support of Leukaemia! We’re very glad you have chosen to be a part of our community. The Leukaemia Support community - offered by HealthUnlocked (HU) - supports individuals affected by leukaemia. Whether you are an individual who has been diagnosed, a
BrettHU
HealthUnlocked
in
Leukaemia Support
1 month ago
MF and anemia
Recently diagnosed, 56 years old on my 3rd month of Ruxolitinib, now have anemia and been put on ferrous fumerate. Consultant didnt want to put me on them, Anyone else had this issue?
Recently diagnosed, 56 years old on my 3rd month of Ruxolitinib, now have anemia and been put on ferrous fumerate. Consultant didnt want to put me on them, Anyone else had this issue?
Lallybroch1
in
MPN Voice
2 months ago
A bit of advice please.
Hello Everyone I have ET JAK2 and currently taking Hydroxycarbamide. I have be reading about ruxolitinib and wondered if anyone out there takes this medication to treat ET JAK2 ? I have read that this is to treat PV whilst also read about it being used for ET JAK2 so I’m a bit confused 🫤 Yvonne
Hello Everyone I have ET JAK2 and currently taking Hydroxycarbamide. I have be reading about ruxolitinib and wondered if anyone out there takes this medication to treat ET JAK2 ? I have read that this is to treat PV whilst also read about it being used for ET JAK2 so I’m a bit confused 🫤 Yvonne
YBSx
in
MPN Voice
2 months ago
Choices.
My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here. I have been offered places on trials which are taking
My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here. I have been offered places on trials which are taking
Petsgalore
in
MPN Voice
2 months ago
Ruxolitinib - declining efficacy?
Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my haematocrit has been stable, with no side effects. My general health and fatigue levels have improved markedly. However over the past 18 months my
Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my haematocrit has been stable, with no side effects. My general health and fatigue levels have improved markedly. However over the past 18 months my
Rob58
in
MPN Voice
2 months ago
Jak2 question and PV question (have medical anxiety so nervous)
Hey everyone sorry for such a long message. I'm a 28M and have had consistent high RBC, HGB, HCT counts for about 8 years now. The numbers though are ever so slightly elevated and range from (5.9-6.1 RBC), (16.7-17.2HGB),and(49-50.4 HCT) during those 8 years they each either went up or down and did NOT
Hey everyone sorry for such a long message. I'm a 28M and have had consistent high RBC, HGB, HCT counts for about 8 years now. The numbers though are ever so slightly elevated and range from (5.9-6.1 RBC), (16.7-17.2HGB),and(49-50.4 HCT) during those 8 years they each either went up or down and did NOT
HockeyFan47
in
MPN Voice
2 months ago
Myelofibrosis - pain in quad muscles
Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2 myelofibrosis are experiencing pain in their quads (thigh muscles) when walking or running. My specialists are baffled by this, and I can find no mention
Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2 myelofibrosis are experiencing pain in their quads (thigh muscles) when walking or running. My specialists are baffled by this, and I can find no mention
TimGS
in
MPN Voice
2 months ago
Bone loss, due to any CLL treatments?
This is not strictly related to CLL. My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the jaw area. Are there any CLL treatments that cause bone loss?
This is not strictly related to CLL. My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the jaw area. Are there any CLL treatments that cause bone loss?
MistyMountainHop
in
CLL Support
2 months ago
Muddled
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Anouchka
in
MPN Voice
2 months ago
New to Rux
Hi everyone. Thank you all for all the useful replies I got to my last question. Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day. Someone
Hi everyone. Thank you all for all the useful replies I got to my last question. Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day. Someone
Sivasi
in
MPN Voice
2 months ago
Shingles and Ruxolitinib
I note that on the Blood Cancer web site is states that [i]Aciclovir is an anti-viral medication that prevents shingles, which can be a side effect of Ruxolitinib.[/i] [i]If you’re on Ruxolitinib, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking
I note that on the Blood Cancer web site is states that [i]Aciclovir is an anti-viral medication that prevents shingles, which can be a side effect of Ruxolitinib.[/i] [i]If you’re on Ruxolitinib, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking
nanmc
in
MPN Voice
2 months ago
sct update so far
I just wanted let you all know how iam getting on I have been in since the 29 and have been having chemo daily I have had no side effects so far my doctor said I can take chemotherapy like water but don’t get to ahead of myself as this is the easy bit which I knew from countless hours of research but
I just wanted let you all know how iam getting on I have been in since the 29 and have been having chemo daily I have had no side effects so far my doctor said I can take chemotherapy like water but don’t get to ahead of myself as this is the easy bit which I knew from countless hours of research but
Leighcox85
in
MPN Voice
2 months ago
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